Tuesday, October 24, 2017

I
did see my oncologist on 8/31 as promised. I also
had my Lupron (androgen deprivation or hormone blocker) shot right after the
appointment. My oncologist said I looked
good and my labs were also generally good.
My PSA is still at 0.03 but my testosterone was higher than he would
have liked. [That just shows that you
can’t keep the old boy down, even with hormone-blockers.]

My
oncologist is operating under the theory that testosterone feeds prostate
cancer. Hence he would like to see it
below 25. On 8/29 mine was 53. This could have been because I had chosen to
get the Lupron shot two weeks after the 90 day mark. It could also be that some of the supplements
have had the effect of raising my testosterone level. BTW 53 is pretty low, since men my age
usually have around 278 ng/dl. I used to
have 450+. Those were the good old days.

I
have gotten back into my exercise program, doing push-ups at night and going to
the gym to do strength exercises. I
think this is helping my stamina and posture.
I don’t go overboard because I am afraid to end up like Arnold
Schwarzenegger.

I
have become more active in UsToo, an online organization of men fighting
prostate cancer. I have learned quite a
bit just by hearing other stories. I
also learned about a doctor at the Mayo Clinic in Rochester who is going for
the cure in patients with Advanced Stage IV Metastatic Prostate Cancer like me. More on Dr. Kwon later.

Palliative vs. Curative. Let me explain that my treatment and the
treatment of practically all patients at my stage of the disease is palliative,
which means that the doctors try to keep it at bay with the expectation that it
can’t be beaten in the long run.
Curative is treatment designed to rid the body of the cancer once and
for all. The problem is that curative
treatment still has relatively low win odds and the patients often go through
more aggressive, invasive treatments while the doctors attempt to kill all of
the cancer.

Do metastases replicate the same cancer throughout the
body?In the past it was thought that this was the
case. If so, if one is able to kill one
cancer, it would be possible to kill them all.
Unfortunately perfect replication is not the case. As cancers spread, they tend to mutate into
different forms. As a result, either
draconian treatments have to be given to kill everything that grows (chemotherapy),
or multiple different treatments are called for to get rid of all of the now
different cancers.

Dr. Kwon. Going with a curative approach Dr. Eugene Kwon at Mayo uses a different type of PET scan to find
tumors. It is a C11 Choline Pet
scan. My hospital doesn’t do C11 PET scans. Dr. Kwon says C11 scans are more accurate in
finding small tumors. As I understand
his process, once he sees that there aren’t too many tumors, he then tries to
gather information about each tumor, either by biopsies or other means. He then develops treatment plans for every
tumor. The treatment may be radiation,
chemo, or anything else. He has had some
real successes with this multi-treatment approach, but he admits to having
failures as well.

The
question is whether I should subject myself to Mayo. At one point I was ready to jump on a plane,
but I’m a little reluctant now, in small part because of Kathe’s and our schedule
and in greater part because I am doing pretty well now. Of course catching this early as possible
would be best. At the same time I don’t
particularly want to find out that I am not a candidate. In any case I have ordered copies of my
reports and scans to be ready to go.

My schedule. I have been fortunate enough to have been
nominated and then chosen to be on a team that will be evaluating research
proposals applying for grants from the Department of Defense in the area of
prostate cancer. It is called the DoD Prostate
Cancer Research Panel - Cell Biology. I
am the lay consumer on the panel. I will
be going to Reston, VA in the end of December.
It will be interesting being a lay panel member surrounded by renowned
medical scientists. I have been included
because the DoD wants to make sure that the grant choices take into account the
patients who might be recipients of the research. I’ll have to write my critique of each of the
applications.

Sugar feed cancer?
While I was corresponding with several others with the same cancer as I
have, I mentioned my avoidance of sugar and carbs as part of my dealing with my
disease. I was pointed to an article on
the Memorial Sloan Kettering website that said that it is not true that sugar
feeds cancer. The article said that
people have falsely concluded that because cancer attracts the glucose in the
radioactive cocktail taken for PET scans, glucose must be what cancer thrives
on. Well, needless to say, I would like
to believe this and eat some cookies that I have craved for a solid year, but
based on all of my other reading I can’t accept this anywhere near 100%. What MSK does say is that sugar and carbs
lead to obesity and obesity in turn does seem to increase cancer growth. I’m not gaining weight but I do think a low
sugar, low carb diet is good for me, no matter what.

So, what is happening inside me? This I truly want to know. The doctors say that the only indicator of
growth is PSA. This makes me want to get
a PSA test every few weeks, but my doctor and my insurance provider have
something to say about this. The other
possible indicators are secondary effects of cancer in my bones. As a result I am concerned with every ache
and pain that it is the result of growing cancer. My aches and pains don’t seem to be getting
worse in general. I do feel dull pain in
my chest when I first lay down on my side, but this goes away. This could be due to my exercise to some
extent. I also feel sharp pains
different places in my legs from time to time, but this may be Lupron side
effects. Recently I was feeling a little
dizzy and had a slight headache. The
headache could possibly be the cancer in my cranium, but the pain seems to have
subsided. The dizziness is likely due to
the Lupron. I’d like to get more PET
scans, but I heard that the doctors are reluctant to do this because of that
glucose attraction mentioned above. Of
course the cost might be the real reason.
It may just be true that there isn’t much of a change, but I want
feedback to help me know if the diet, supplements, and exercise is helping stem
the disease. This lack of data is quite
frustrating!